Addressing the epidemic of antivaccine misinformation

Last week, Dr. Gorski was on vacation. However, part of his vacation involved spending a couple of hours with two of his heroes, meeting new pro-science advocates, and talking vaccine hesitancy and the antivaccine movement.

Those of you who are my Facebook friends or otherwise follow me on social media other than blogs know that I was out of town last week. Specifically, I traveled to the San Diego area to participate in a panel discussion at a conference and, while I was there, made a vacation out of it with my wife. As a result, as I write this I am still a bit jetlagged, which means that this post could very well end up being considerably shorter than the typical Gorski magnum opus. (If it does, whether this is a good thing or not, I leave up to the reader to decide, although I suspect our intrepid copy editor will be relieved not to have so much work.)

The conference was the World Vaccine and Immunotherapy Congress West Coast 2018, and the panel was Addressing the epidemic of misinformation. As I pointed out when I was invited, I’m not by any means an expert in vaccines (although the conference did have some interesting talks on cancer vaccines and immunotherapy), but I do now consider myself to be an expert in the antivaccine movement (at least in the US) and antivaccine messaging. It was for that role that I was invited to participate.

Another appealing aspect of the panel was the opportunity to meet two of my heroes. First, of course, there was California State Senator Richard Pan, the pediatrician turned politician who co-authored SB 277, the law passed in 2015 that eliminated nonmedical “personal belief exemptions” to school vaccine mandates in California. It’s a bill that was highly contentious but has clearly worked to decrease the number of personal belief exemptions. Then there was Dr. Peter Hotez, the Texas Children’s Hospital Endowed Chair of Tropical Pediatrics and the founding dean and chief of the Baylor College of Medicine National School of Tropical Medicine. He also wrote an excellent book, “Vaccines Did Not Cause Rachel’s Autism: My Journey as a Vaccine Scientist, Pediatrician, and Autism Dad“, because he has an autistic daughter who is now an adult.

In which Dr. Gorski (right) gets to meet two of his heroes, Dr. Peter Hotz (center) and Sen. Richard Pan (left).

I must admit that I was unfamiliar with the other two members of our panel. First, there was the moderator, Robb Butler, who is a social scientist currently assigned to UNICEF to establish a global center for vaccine demand and acceptance, supported by the Bill and Melinda Gates Foundation. He also previously served as a behavioral scientist for the WHO Regional Office for Europe before becoming that program’s lead. That’s some serious stuff, and it was very useful to have a more European perspective. Then there was Dr. Eve Dubé, a medical anthropologist working at Quebec National Institute of Public Health, a researcher at the Research Center of the CHU de Québec-Université Laval, and an invited professor in the Anthropology Department at Laval University. Her research focuses on the socio-cultural field surrounding immunization, particularly vaccine hesitancy and how to address it. She also leads the Social Sciences and Humanities Network of the Canadian Immunization Research Network. Her perspective, too, was quite valuable.

I’ll now relate what happened last Wednesday. I wish the talk and panel had been recorded, but as far as I know it wasn’t. Also, I’m going totally by memory because, as a panel participant, I really didn’t have much of an opportunity to take notes. As a result, this account might be a bit stream-of-consciousness. However, given that that’s how I frequently blog anyway I doubt that many will notice the difference.

The morning began with Dr. Pan’s keynote address, which was basically the saga of how SB 277 was passed. I knew some, but far from all, of the background covered by Dr. Pan. One of the things he confirmed for me is something that I’ve been discussing for a long time, and that’s how the Republican Party has become, if not the antivaccine party, the party most receptive to the arguments of the antivaccine movement against school vaccine mandates. Some of you might remember when I discussed elsewhere an antivaccine campaign event held the last week of the state primary season by a candidate for the Republican nomination to run for the open seat in Michigan District 11 in the US House of Representatives. It was a roundtable that was anything but rounded in that it was all antivaccine activists and quacks, plus the candidate (Kerry Bentivolio), plus my state representative (Jeff Noble), plus a Republican candidate for the gubernatorial nomination, my very own state senator Patrick Colbeck (who has serious antivaccine tendencies and co-sponsored legislation to reverse a policy change that made it harder to get personal belief exemptions, or, as I like to put it, to “make measles great again“). Basically, Sen. Pan confirmed that similar dynamics are at work in California as in Michigan. Specifically, I point to a remark by Rep. Noble in the Q&A in which he mentioned that the Republicans on the Health Policy Committee were the only ones receptive to “vaccine choice” initiatives, while the Democrats won’t even consider them and characterized their position as wanting to “shove vaccines down your throat (or arm)”.

Sen. Pan wanted to make a point that support for vaccines is bipartisan and that many of the Republicans who were balking at voting for SB 277 weren’t hesitant because they were antivaccine. I also suspect that the reasons that many Republicans in the Michigan legislature are more receptive to “vaccine choice” initiatives is not because they are antivaccine, either. Rather, it’s because the antivaccine movement has so successfully co-opted the messages of “freedom”, “parental rights”, and anti-regulation ideology that many Republicans now actually fear being challenged from their right if they are too receptive to vaccine mandates. As Sen. Pan characterized it, he was told that parents who vaccinate did care, but to antivaxers SB 277 is the issue they cared about more than any other and one that they wouldn’t forget about come election time. Indeed, I note that this very thing happened in Texas this year when Lisa Luby Ryan, an interior designer, beat three-term state Representative Jason Villalba in the Republican primary in March, aided by far-right groups, particularly Texans for Vaccine Choice. Sen. Pan, speaking legislator-to-legislator to these Republicans told them that he understood (which he did) and that he understood that the best thing that could happen for them is to vote no and have the SB 277 pass anyway. However, he warned them that, if they voted no and SB 277 didn’t pass, he’d make sure that they’d never forget it the next time there were outbreaks of vaccine-preventable disease.

In any event, SB 277 is a triumph, but it’s an uncommon one. Nothing like it has been passed in the last three years. If anything, it’s been fighting against antivaxers trying to weaken or dismantle school vaccine mandates, and now we have an antivaccine governor-elect in Oklahoma, Kevin Stitt, after having had three gubernatorial candidates who were antivaccine.

Perhaps the most important message that Sen. Pan emphasized during his talk is that it can’t just be doctors, scientists, and politicians advocating for vaccines. The antivaccine movement has powerful stories by parents. From my perspective, they are stories in which parents misinterpret the role of vaccines in causing their children’s illnesses, neurodevelopmental disorders, and other conditions, but they are undeniably powerful. Given that humans are storytelling and pattern-forming apes, parents telling them that their children received vaccines and then became autistic are far more influential than all the scientists and doctors citing studies and data in the world. So, Sen. Pan pointed out how advocates of SB 277 formed a parents group, Vaccinate California, to advocate for SB 277 and how firmly convinced he is that SB 277 would never have passed without parental advocacy. The problem, of course, is that parents who vaccinate, like most pro-science advocates, tend to take the science for granted. They support vaccines, but vaccination is just one important issue among several. In contrast, to antivaxers vaccines and vaccine mandates are their single issue, the thing they care about more than anything else. A minority group with intensity can win out over a majority group without it.

The number of reported measles cases around the world increased by more than 30 percent from 2016 to 2017. A new report by the World Health Organization and the CDC attributes that to a gap in vaccine coverage.

Measles outbreaks increased in all but one of the WHO regions — the Western Pacific, which actually reported a decrease in cases. That region is also the only one to have maintained 95 percent coverage of the vaccine’s first dose, while global coverage has stalled around 85 percent.

The WHO’s deputy director general for programmes expressed concern about the vaccine gap. She said in a statement, “Without urgent efforts to increase vaccination coverage and identify populations with unacceptable levels of under-, or un-immunized children, we risk losing decades of progress in protecting children and communities against this devastating, but entirely preventable disease.”

But medical experts say those global successes have depended on the vaccine. Regions that do not have a high rate of vaccine coverage, whether due to a lack of access or conscious rejection by parents, are susceptible to a rise in measles — even relapses in areas where the disease had been nearly or entirely eliminated.

In the U.S., for instance, 220 measles cases have been reported so far this year as of Nov. 3, according to the CDC. There were 86 cases in all of 2016.

And the European Union has seen a measles outbreak that epidemiologists have tied to falling rates of vaccination, due to occasionally erratic vaccine supplies and anti-vaccine movements. In the first half of this year, the WHO says more than 41,000 children and adults in Europe were infected with measles — in other words, nearly double the cases recorded all of last year, which, in its own right, was the highest annual total in years.

What interested me was how, right off the bat, there was a bit of a disagreement. No, that’s not exactly right. What we had was a difference in perspective between the European experience, as discussed by Robb Butler, and the US experience, as discussed by Sen. Pan, Dr. Hotez, and me (and, to a lesser extent, Dr. Dubé). In the US, we tend to have high vaccine uptake overall, with pockets of low uptake that can be attributed primarily to areas with large numbers of vaccine-hesitant parents whose fear is fueled by the antivaccine movement. In contrast, Butler argued rather vigorously that the main problem in Europe isn’t the antivaccine movement, but rather issues in supply and parental complacency. To be honest, I wondered at the time if Butler’s perspective was colored by his role with WHO, which tends to be all about access to public health interventions and less concerned about politics and ideology, but I had to take him seriously.

Sen. Pan pointed out that antivaxers in the US are increasingly organized, social media savvy, and well-funded. As examples, he noted how antivaxers raised at least a half a million dollars to oppose SB 277 and then later Robert F. Kennedy, Jr. backed a left wing candidate who was also antivaccine, joking that in their attempt to unseat him antivaxers had a lot of money but were not particularly savvy in how they used it. As part of this discussion, I chimed in about how antivax is the pseudoscience that is embraced by all political persuasions: On the right, it’s fed by distrust of government and science while on the left it tends to be fed more by distrust of big business (e.g., the pharmaceutical industry) and the belief in more “natural” treatments. Even as I pointed to how now, in 2018, the most influential and powerful voices in the antivaccine movement come from the right, we noted that this predates Donald Trump’s rise to become President. Sen. Pan, in fact, explicitly pointed this out by expressing disbelief at something I had written extensively about, namely how two physicians, Ben Carson and Rand Paul, running for the Republican nomination in 2016, both refused to endorse the safety and efficacy of vaccines, leading me to point out that Rand Paul is antivaccine and believes against medical and scientific evidence that vaccines cause autism and other conditions. To Sen. Pan this indicates that the politics of vaccine mandates has shifted, and I tend to agree. Examples outside of the US include various populist movements in Europe, such as the Five Star Movement in Italy, which also promotes “vaccine freedom”.

As you might imagine, when it came to what to do about the tsunami of antivaccine misinformation that pediatricians and science advocates are dealing with, answers were less satisfactory. As Dr. Dubé and several others noted, it is not due to information deficits that people become antivaccine, and information alone will not change people’s minds. Dr. Hotez expressed dissatisfaction with what he views at the wimpy response of the CDC in promoting vaccines, but Sen. Pan pointed out that government agencies are limited in what they can do and are always looking over their shoulders to see what the legislators who keep them funded want. As an example, he referenced (although not by name) the Dickey Amendment, the 1996 amendment to a Congressional appropriations bill that stipulated “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention [CDC] may be used to advocate or promote gun control.” As we’ve noted here before, this was clearly intended to intimidate the CDC by directly threatening its funding, and the tactic worked. The CDC got the message, and, in effect, nearly all research into gun violence at the CDC stopped. To be honest, I’m not sure that the same would be true for vaccines; even in Congress as it is now I don’t think there are enough powerful antivaxers there who might do the same in response to the CDC becoming too vocal about promoting vaccines. Even most conservatives would likely agree that vaccines are a legitimate public health tool and that the CDC would be well within its purview to promote vaccination, but I saw Dr. Pan’s point.

In the end, we were all a bit pessimistic. Dr. Pan said that he knew we would win, but it was only a question of how many would have to suffer and die first. His point was, depressingly, that antivaccine sentiment will lose favor as vaccine-preventable diseases are resurgent and start harming and killing people. I wished that I could disagree, but I couldn’t. On a more hopeful note, we realized that the best way to promote vaccination would likely involve something along the lines of Vaccinate California, grassroots organizations led by parents who have compelling stories plus science to use to counter antivaxers’ compelling stories plus pseudoscience. Unfortunately, we had to concede that the obstacles to such an approach are huge, given the differential in resources between antivaccine and pro-vaccine groups and PACs. Still, even when you know that the solution is difficult and you’re outgunned, getting together with a couple of your heroes plus a sympathetic audience can help to recharge your batteries and rev you up to rejoin the fray. It also can’t be understated how important it is to make scientists realize just how pervasive antivaccine views are and how dangerous they can be.